Friday, July 15, 2011

Dylan - Our Little Warrior

Dylan joined our family in December 2010. My pregnancy was a normal pregnancy. No complications. No abnormal ultrasounds. Nothing to worry about. It was fairly stress free and I thoroughly enjoyed being pregnant, just like I did with my first. Labor and deliver, as well, were fairly stress free with no major complications. After around 9 hours of laboring and a quick 1 minute or so of actual pushing, Dylan was born. They put him on my belly immediately. Bryson cut the cord. I cried and cried. Dylan cried and cried. He was beautiful! So perfect! I instantly fell in love with this little boy. It was overwhelming. That moment is something that can't be described in words. Such a sweet, peaceful, perfect moment. Bryson and I were all smiles and so happy. So in love with our new little boy. They took him away to clean him up and measure him. He was perfection!

The rest is an excerpt from a personal blog entry I wrote in February 2011 regarding Dylan's birth and his diagnosis:

After I got to hold Dylan for a little bit, they took him to clean him off, check his stats, etc. As I was watching from the bed while the doctor was fixing me up, on my "just had a baby" bliss/high/awesomeness, I heard words no mother wants to hear, coming from my husband no less, "Is there something wrong with his leg?" The nurses all started fussing around, "No, no". I looked over at the commotion at the table, Bryson bending closer to Dylan, looking closely, the nurses bustling around. I looked over at my doctor with a questioning look on my face and he said, "It did look like he might have a clubbed foot, but those things can be fixed fairly easily. I wouldn't worry about it." Bryson looked back at me and the look on his face makes me tear up now just thinking about it. He was scared, I could tell. I mouthed to him "Is it bad?" He shook his head yes. My doctor continued to talk to me about, I honestly don't know what, he was trying to brush it off as not that big of a deal, trying to make me feel okay, and it was comforting, but I could tell Bryson saw more. The nurses started examining his leg better and found an interesting looking bump on his shin area. They had a pediatrician come in right away to look at it. She said that it looked like a bump on his tibia, but she couldn't tell what it was. They would have our normal pediatrician come in later and take a look and maybe do some x-rays to figure out what it was. But otherwise he was nice and healthy! I remember laying on the bed feeling somewhat helpless as everyone gathered around Dylan examining him. But I also was feeling an OVERWHELMING peace. For whatever reason, I did not allow myself to even think about what could possibly be wrong (which is SO unlike me...I am an over thinking worrier). I just KNEW at that moment that everything was going to be okay.

They wrapped him up, Bryson held him for a little bit while he brought him over to me. I held him and didn't even think about his leg. I didn't want to look at it yet. I don't know why. I look back now and I think Heavenly Father just wanted me to enjoy this new baby and enjoy the moment without stressing. I'm glad, because I look back and that moment was filled with happiness and only happiness.

After a lot of cuddling and loving, Bryson went with the nurses to the nursery to get him bathed while they finished getting me all cleaned up and moved to the recovery room. I was still in happiness bliss. No worries. I felt great. Dylan seemed perfectly normal and healthy, besides whatever this "small" issue with his leg was.

Once Bryson came back with Dylan from the nursery and we finally got a moment to ourselves. Bryson started telling me about what he saw and thought at the moment he noticed something was wrong and he showed me Dylan's leg. His foot did look "clubbed" or something. It was turned in funny and just a little more different looking than his other foot (wider, flatter, shorter). His ankle didn't look right. There was a rather large bump on his tibia (or so we figured). It almost looked like the bottom portion of his leg was broken. We questioned whether maybe he broke his leg in utero and it healed funny being all cramped up. The biggest issue that we could see though was the fact that his leg was much shorter than his right leg.

We (probably more so me than Bryson) chose not to think about it. We talked about it and we both felt peace knowing whatever was wrong, he was going to be okay. I told him I didn't want to dwell on it until we knew for sure what it was. I, for whatever reason, was able to really not even think about it. Bryson struggled a little more, I found out later, like any dad would. I was just so happy about this new, precious, perfect (in our eyes) little bundle. He was such a sweet baby from the very beginning. SO good. We sat and admired our new addition, giving him lots of love and got some rest.

Later that morning a doctor from our pediatrician's office came in. She has been an angel! She wasn't our normal pediatrician, but it was MEANT to be that our doctor was on vacation at the moment and she came in his place. She came and examined him and her guess too was that he had a clubbed foot, no idea what the bump was but it didn't seem too serious. She talked to us about his leg discrepancy and was telling us about this leg lengthening surgery that they do nowadays and really made us feel more at peace with the whole thing. She told us about her daughter and how she was born with some severe hip issues and has had to be in and out of the orthopedic surgeon's office for many years getting things fixed. She told us we would become best friends with our orthopedic surgeon, but that what he (Dylan) seemed to have seemed to all be things that could be fixed. She referred us to her orthopedic surgeon (who happened to be the head of the Orthopedic Department at the Children's Hospital) and she made a few calls for us. She got us the surgeon's personal assistant's direct line so we could get in as soon as possible (instead of the months wait that it typically is). We made an appointment for the next week and that was that.

We tried really hard to not think about it. But it was hard. We couldn't help but start to think about all the "what ifs". We couldn't help but imagine how this would all affect Dylan's life. And at this point we had NO idea what it all was. However, we felt an overwhelming peace knowing he was going to be okay and we tried to always think about that and remember that feeling whenever we started to think or get overwhelmed with all the what ifs. Our families were all amazingly uplifting and positive.

As the appointment drew closer with the orthopedic surgeon reality of it all started to sink in for me a little more and I started to become a lot more emotional about it. No matter what this all ended up being, it was pretty obvious that this was going to be a pretty big part of Dylan's life. Would he have to have surgeries? Would he be able to walk? If he could walk would he walk with a limp? Would kids make fun of him? Was there something else wrong associated with this? I found myself crying myself to sleep the couple of nights before the doctor's appointment.

The night before our appointment, I couldn't sleep and started looking up this leg lengthening surgery that the pediatrician had mentioned. As I was surfing different websites and reading about it, I kept reading this "fibular hemimelia" condition and decided to google that. I found a picture of a leg with fibular hemimelia and immediately knew this is what Dylan had. The tell tale bump on the tibia with a dimple. It was exactly what Dylan had. I nudged Bryson (who was asleep next to me in bed) and showed him the picture and told him this had to be what Dylan had. Further searching of fibular hemimelia found me reading the word amputation over and over and over and over again. I was HYSTERICAL. Full on shaking sobbing. I finally put my iPod down and forced myself to go to bed because I couldn't handle it.

As we walked into Childrens Hospital the next day, Bryson and I were a bit overwhelmed. I was extremely puffy eyed. Like I seriously felt like I had been punched in the face and couldn't open my eyes all the way. That's what extreme hysterics does to you. :) All thanks to Google! :) As we waited in the orthopedic department waiting room, I kept welling up with tears. And each kid that walked in, most with severe orthopedic problems (scoliosis, cerebral palsy, major deformities in their backs or legs) I had to bite my lip to keep from just breaking down bawling. Was that what Dylan had? Or maybe he has what that kid has? Obviously my mind was going crazy thinking the worst.

Once in, we talked about the issues with the nurse, and then a resident student came in to exam him. He said the foot didn't look clubbed, which was a surprise to us since that is all we had heard from anyone at the hospital. He said he didn't know what the other leg issues were and would have Dr. E (the orthopedic surgeon) come in. As soon as Dr. E took one look at Dylan's leg, he said what I had already figured out the night before. X-rays were taken to confirm it.

Dylan has what is called Fibular Hemimelia, or what the doctor liked to also call Longitudinal Deficiency of the other words, Dylan has no fibula bone. The fibula is the smaller of the two bones typically found in a leg below the knee. He also has Congenital Short Femur, which means that on top of having no fibula, which contributes to the lower portion of his leg being shorter, he also has a short femur. So that is the official diagnosis. He does not have a clubbed foot as originally thought. The foot just appears clubbed or turned in because it doesn't have a fibula bone to help anchor it straight like a normal foot would. But other than that, the foot is in good condition. In fact, the doctor was impressed that his foot was in as good of a condition as it is, because typically with Fibular Hemimelia they don't have a full functioning foot. They typically have missing toes and feet bones. Dylan has all five toes and it appears from the x-rays that he has all the necessary foot bones as well. This is a good thing and can be helpful in the future as long as the foot stays in, as long as the foot is able to bear weight and stretch and move. The bump on his tibia is the actual tibia bone bowing (bending) and is typical with Fibular Hemimelia. There is a very small chance that this will correct on it's own as time goes on, but most likely will need surgery in the future to straighten it out.

How severe is Dylan's case? On a scale of 1 to 10 (10 being most severe, 1 being best case possible), he put Dylan at a 7, maybe 6. Dylan's leg deficiency is quite severe. Right now it's about 30% shorter than his other leg and that will most likely be the case the rest of his life (without any sort of intervention). The fact that he has what appears to be a functional foot bumps the severity down a notch, but only time will tell what the foot can do for him. The good news is that this condition is not associated with any other conditions or disorders as far as heart or brain or other body parts are concerned. It's just the limb. It's fairly rare, but it's not believed to be genetic. Just a "hiccup" in the gene sequencing that goes on in the first 4 to 8 weeks of gestation.

What can they do?? At this point we can't do much of anything. The doctor said to just let him be a normal baby...let him crawl, let him walk if he wants to try to walk (eventually). And that's what we plan on doing. We will be going to the orthopedic surgeon on a regular basis (every 3 months or so for now) to redo x-rays and see what kind of progress he is making on his own. They'll be checking the growth of his femur, and the growth and straightening of his tibia. There is a very small chance that he might have a portion of a fibula in there that isn't showing up on x-rays because it's too cartilaginous to show up yet, but it's not looking like it so far and I don't think it would make that much of a difference if that was the case anyway. But they'll be checking for that. We'll be checking to see how his foot develops. As of right now his hips appear to be in good shape and not affected, but they'll be keeping an eye on that as well. As time goes on, we'll be able to come up with a game plan depending on how things progress and develop. As far as the future goes, he's got a long road ahead of him. There are different options that are available, but until we know more about how things develop we don't know which option(s) is the best. At this point nothing can be ruled out and nothing can be decided on. The different options that we will most likely have to decide on later are risers/lifts (special shoes to help make up the difference), leg lengthening surgeries (which would be years and years of surgeries to help lengthen both his femur and tibia), and/or amputation.

We left the appointment feeling so relieved to finally know what it was, but also VERY overwhelmed. We have a lot of hard decisions to make in the future. Decisions that will affect the rest of Dylan's life and it's overwhelming to think about it. We feel very blessed knowing that it obviously could be a lot worse. We know Dylan will live a full, happy life no matter how it goes down. The advancement in prosthesis these days makes amputation not nearly as scary to think about. We know he would be able to live a very active life with a prosthesis, if that needed to be the case. But the thought of amputating our son's leg is hard to swallow. However if it's the best thing for him then that's just how it is. If he ends up being a candidate for the leg lengthening surgeries instead (which is questionable with how severe his deficiency is) and we feel that is the best route, then we will do the years of different surgeries to try to get his leg to function as normal as possible. We just have no idea what is going to happen.

At this point we are enjoying the awesome, sweet baby that he is and trying not to dwell on what we are going to have to do in the future. But I'd be lying if I said there weren't still moments of tears shed, feeling very overwhelmed thinking about everything Dylan will have to endure (no matter what route we end up taking) . The comforting thing is knowing Dylan will know nothing else. We know he was prepared for this life. We know Heavenly Father wouldn't have given him this life long trial if he couldn't handle it. The day we had Dylan, my aunt said on facebook "Welcome to earth little warrior :)" before she even knew anything about what was going on. We read that and couldn't believe how perfect that comment was. He is our little warrior and he will get through this because he is strong enough to, no question there. We only question if we are strong enough to! :) We know there are going to be rough days/weeks/months ahead. But we have faith we will get through this, we have faith Dylan will get through this. He has family behind him, he has a brother who is so incredibly in love with him and we just know Kaden will be a protective, comforting force in the future for Dylan. He is going to be one strong, special boy at the end of all this.

We are so grateful for the numerous blessings we have received. From the peace felt, to the pediatrician who had been through something similar and had the hook ups, to the blessings and knowledge promised in blessings received both on Dylan's end and ours. We feel very blessed and at peace with this. It'll be a rough road ahead, both emotionally and physically for Dylan, and emotionally for us to have to watch our baby go through this, but it'll end well and we know this. We feel so blessed to have such a special spirit in our family. And we feel honored to know that Heavenly Father trusted us with not only one of his children, but a very special one at that.

We go in next month for a check up and we'll keep everyone posted. Keep Dylan in your prayers (maybe send a few for us too). Love you all!

He's such a HAPPY boy!!

Funny birth Dylan was 17 inches long. Kinda small, we thought, but didn't think too much of it. At his 2 week appointment he was 20 inches (maybe 21, now I can't remember). We (Bryson, me, and pediatrician) all started laughing as we realized they must have measured his length using his short leg at birth, not realizing it was much shorter than his other leg. Otherwise, he had one crazy growth spurt in two weeks! :) From now on we will make sure they measure his "normal" leg so we can get an accurate length measurement. :)


  1. Love reading your story. You look so familiar! BYU maybe? Anyway - brought tears to my eyes many times and I'm so glad the surgery went well today.

  2. oh my goodness. I can't stop crying. Your story is so touching. We will be praying for your family. Dylan is a little trooper. I hope all goes well. prayers your way

  3. I stumbled across you blog quit by accident..... while on make it and love it's blog site I read her post where she was thinking about you and your family. Included in it was a link to read more about Dylan's leg journey which I clicked on and boy am I glad that I did!! I am so grateful for the opportunity to pray for your family. Your story is one of inspiration, courage and, last but definitely not least, faith. Dylan is such a beautiful little boy and he is blessed by having you and your husband as his parents. I look forward to reading about his/your family's journey going forward. :) I thank God that he has given your family peace beyond all understanding and pray that he continues to wrap his loving arms around you and bless you as you go forward on this journey. Your family will remain in my thoughts and prayers. Anita

  4. I came across your blog as I am looking up FH on Google.
    My husband and I are pregnant with our first child and we were just given the prognosis that our baby will have FH.
    As soon as we found out that there was a possibility of it, we instantly adopted the phrase "Just Keep Swimming" like you! (Great minds think alike) So we switched all of Baby's nursery ideas we had to nautical/finding nemo theme!

    Prayers and good thoughts to you and your family and that little Dylan!